Sunday, March 13, 2016

Learning Disability

I'm three months late writing this, and it feels a little wrong to place a magical time in this context; but there you have it. While I've spent the majority of my life "normal," and had visited Disney World four times prior to my stroke (1973, 1980, 2001, and 2010), it's nearly impossible not to view my life now through the lens of disability; and it's important for me to share that perspective with you.

Just to cleanse the palate first, here's a reality check I came across recently: a video of Wyatt and me from the winter of 2006-2007 (he was two). It represents both a pleasant reminder of the person I was (relatively limber and good natured for 37), as well as what I've lost (not quite so light on my feet anymore and a little more bitter). I believe that's called Pathos:

That reminder of my past self was also a good motivator for heading to Florida with my family in early December 2015: wanting to be an active participant in and a contributor to the fun, not just a bystander or lag-behind. So, with italicized lessons of living with a disability in mind (as opposed to letting my disability dictate how I live), this was my wonderful World of Disney:

I've got nothing to prove (even to myself)

Yes, walking around the parks all day -- climbing aboard every bone-rattling, stomach-dropping, head-spinning ride imaginable -- is a nice idea; but, realistically, I would've been slowing down everybody's good time, not to mention needing a nap every day by 10 o'clock in the morning and generally feeling miserable. In anticipation of this hurdle, we visited StoryLand/Disney Lite in New Hampshire this past summer; and rented a scooter for the day. That proved a successful way for me to save my energy as well as keep up with the rest of the group. Successful, that is,  aside from the 15 minutes or so I abandoned Wyatt in the park (coulda sworn he was following me). As for the Disney rides, I felt comfortable playing the “it doesn’t make my head feel good” card; and my family was respectful of that excuse. So no roller coasters for me. The most exciting rides I attempted were the Kali River Rapids in Animal Kingdom (which was especially nice, because the entire extended family could ride together) and the TomorrowLand PeopleMover  – which on the surface is a simple tram ride around the park but is in actuality a deathtrap of quick turns and a revolving sidewalk for getting on and off (departing was especially confusing, as I lost any sense of where I stopped and the floor and cars started). Fortunately, Jamie was there to keep me from getting pulled beneath the track.

As for conserving energy, the scooter certainly helped; but I still expected to return to the hotel for an afternoon nap (something I'm used to having when I get home from work, in order to stay mostly conscious through the evening). However, it generally turned out that the momentum of our Disney good time was enough to  sustain me from breakfast through dinner (even 9:00 fireworks at Epcot one night)!

ABV (Always Be Vigilant) (don't get distracted)

Driving a scooter is a unique experience. It's helpful that I am used to driving a car and certainly useful that they're designed to be operated one handed and with three-wheeled stability. But they have the sudden pick-up and turn radius of no car in existence; and there is every expectation of those around you that if you're in a scooter, you can maneuver it as gracefully as a pedestrian walking down a crowded sidewalk.And you know what happens when you expect.

Add to my relative inexperience with a scooter the fact that, for the literally scatter brained, Disney is the opposite of a sensory deprivation chamber (a sensory bombardment chamber?). And Disney during Christmastime Display-o-rific Set-up is a sensory bombardment on steroids. So driving through crowded parks (even though it was considered a "slow" time of year) -- even in broad daylight -- was an interesting experiment in raw focus.

Driving a scooter through those same paths at night was like driving at night through a blizzard, except the snowflakes are people and you're not allowed to hit them.

Add to the attention-seeking festivities and other tourists an abundance of screaming children, and you've basically got the perfect storm of sensory overload. Fortunately, I'm well versed in the art of filtering out the din of childish things.

I also saw the presence of screaming kids at Disney an essential service to myself and others:

  • Non parents get to promise themselves they'll never have kids or delude themselves into thinking their kids "won't be like that".
  • For parents whose kids aren't the screamers, you get a blissful moment of "at least they're not my kids."
  • If the kids are foreign, they scream with a charming, international flair that re-enforces the universality of parenthood's curse.
  • If your kids are the screamers, you experience a momentary fantasy about how many Disney characters in costume are actually children "accidentally" left behind and raised by the Hospitality-Industrial Complex.
  • Oh, right. And sometimes you get to witness the unmitigated joy of your children living the Disney dream (good for years of ammunition to hold over their heads when they're complaining about how horrible their lives are and how they never get to do anything fun("You mean, like when we pulled you out of school for a week and took you to Disney World?!")

If it works...

Dealing with my disabilities has become a systematic, extremely deliberate effort to figure out what works for me and stick to it. I have definitely become a creature of habit:

  • I fill my M-F morning and evening pill boxes every Sunday as soon as I wake up and then make sure they're securely stowed at  their respective stations (lunch bag for transport to work Monday and in the basket next to the recliner in the TV room for evening dosage).
  • Everything I need throughout my day is stored in a designated pocket of my "tactical" messenger bag (I think this ones the winner and has introduced me to an entire world of Velcro "Morale Patches", so I'm never without my wallet, phone, paper, or pen (not to mention my travel coffee mug [in cup holder] and keys [attached to my bag via Qlipter]
  • To give myself enough time to get ready in the morning, I shower and use the Squatty Potty on alternating days.
All that really means is that I've found systems and routines that help me balance out my challenges and deficits. When I travel, I may have to modify those routines or develop new ones, but I've become quite adept at adapting. We all quickly learned that the scooter gave me the freedom to forge ahead of the group or to catch up quickly. It also meant we would have to adjust on the fly, depending on the attraction (scooters go in the Country Bear Jamboree but must be parked outside Toy Story Midway Mania). Also, there's a special loading area for scooters at the resort-to-park bus stops.

If it doesn't Work...

Have I mentioned that scooters aren't all that easy to maneuver? We learned fairly quickly that making the turn up the narrow bus ramp was not my strong suit. Fortunately, the bus drivers have enough experience with this phenomenon that I started getting off the scooter, putting it in neutral, and simply pushing it into the designated parallel parking space inside the bus. Relieving that little bit of stress each time we left for a new park or to go back to the hotel made a world of difference in my overall experience.

Graciously Ask For Help

One of the first things I had to learn years ago was to ask for help without shame nor expectation. People want to help. It was good for members of the family to have jobs I couldn't handle myself (for example, Jamie and my brother did the actual pushing of the scooter onto the bus, and Wyatt would drive it into our room each night for charging.)

Graciously Accept help

Did I mention people want to help? Sometimes they want to help so much that they don't even ask. So I just have to grin and appreciate it. Most of the time I think I'm able to do that without pride or resentment.

No matter what, I am still responsible for myself

Part of appreciating help from others comes in demonstrating to them that I don't actually need help. I've been at this awhile now and have figured out how to handle myself. But there's often going to be someone who thinks s/he knows better.For the first day or two in the parks, Jamie would walk along side the scooter, periodically adjusting my speed (usually faster). But, ultimately, I was the one responsible for not smashing into people or lampposts, So I had to make that very clear for her -- that I would keep up or not get ahead or lost. That's why I also like my man purse: it gives me a way to make sure I have everything I need at all times so I don't have to ask of others.

And I'll admit I got a fair amount of satisfaction out of the moment when Jamie -- not realizing the scooter was in gear-- accidentally put her coffee on the accelerator (which is a lever on the handlebars) and ran over herself.

Judge not and ignore those who do.

I'd been warned before the trip that scooters were heavily used in the parks but often by people who didn't really need them. To that I say, "who's to say what need is?"

It's taken a lot for me to accept that I'm better off accepting accommodations for my disabilities than to push through the burden of others' judgment, whether it's a scooter to help me keep from getting exhausted on the trip and slowing everyone around me down, a wheelchair to do the same in the airport, or even the automatic door buttons on many doors, using handicap parking spaces (though I still flinch a little when using "Van Accessible" spaces, since I don't have a van), and disabled stalls in public bathrooms.

ADA requirements in public places are safety measures that ultimately save businesses and taxpayers millions in medical bills and lawsuits;  they're not enabling fat, lazy slobs. Yes, that's my own, harsh interpretation of society's bias against the disabled.

Which brings me to what I did observe while on holiday. What with the new, Disney-owned Star Wars movie releasing soon after our visit, there was an abundance of promotional gear around (though my On-Demand Generation children refused to wait in the 45 minute long line to meet Darth Vader and Chewbacca!): I saw quite a few men wearing,  "Judge me by my size, do you?" t-shirts. Shamefully, I missed that it was a Yoda quote and interpreted it as a body shaming statement by the large men wearing them, though none were in scooters. Cuts both way.

Mind you, I'm getting out of shape enough to resemble that remark, but I was still somewhat glad to have my leg brace on full display and my cane riding shotgun, as if to say, "No, really, I do need the scooter."

I received a few nasty glances thrown in my direction if I didn't give pedestrians the proper right of way," but generally comported myself acceptably and didn't have any direct altercations.

It's interesting how, lately, the narrative of "entitlement"'s been rewritten. I thought it meant over privileged. Entitlement was for the Haves. Now it seems to mean you feel society owes you something. I've seen that attitude perpetuated more by people afraid of losing what they have than by people who've lost what they had and learned to live without.

In my experience, disability is victimless, in that seeing yourself as a victim serves no purpose. Self pity is only good for peaches and asteroids.

As the Disney operators say, "Have a Magical Day!"